In life with FA, I’m lucky to have the support of friends who love me

Saturday, Sept. 21, was a sloppy one. Skies were gray and rain poured down, but there were lots of smiles to go around. It wasn’t an ideal day for the Race for Matt and Grace, a 5K run and 1.5-mile walk to benefit my patient organization, the Friedreich’s Ataxia Research Alliance.

This event has been happening for almost 15 years, and I’ve been lucky enough to attend every time. Everyone greets you with a metaphorical or literal hug. I’m happy to receive either as often as possible, so I happily attend — puddles on my lap be damned.

I use a wheelchair because Friedreich’s ataxia (FA) has severely impaired my balance and coordination. When you use a wheelchair in the rain, you’re prone to those aforementioned puddles in your lap.

Three of my treasured college friends — Fran, Pat, and Cathy — have joined me at this event for years. These women never fail to make me laugh and take life less seriously, both of which help me be a healthier and happier person.

That’s been true since I met them as a freshman. One of my beloved college memories is what I call the Sunday morning roundup. All of us would lounge around on the beds in one of our dorm rooms, giggling, moaning, and recounting the weekend’s events.

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Hiding my FA

I was diagnosed with FA in 1981, my sophomore year of college. At that time, I’d spent a year or so visiting neurologists, trying to figure out why I had to look at my feet to walk, among other early symptoms. Walking, riding a two-wheel bike, and even jogging were still possible for me. In my head, I could still fake not being sick, so that’s what I did.

However, people often thought I was drunk when I wasn’t, and my friends would tell me not to wear heels out to a party because I wobbled too much. I wasn’t as smooth as I thought.

Why did I hide my FA? One reason is simply because I was an awkward young person trying to fit in. That was just a healthy part of human development. I thought that being different from my friends meant they’d reject me. No more Sunday morning roundup.

They wouldn’t have rejected me. What I felt wasn’t true. But back then, I didn’t test my assumption and behaved according to my beliefs about fitting in. I continued to hide (or think I was hiding) my FA.

The other, more pernicious reason I didn’t disclose is that I was ashamed of having FA. To many of you, it may seem weird to be ashamed of having a genetic disease. In hindsight, it seems that way to me, too.

Unfortunately, being ashamed is often a part of being chronically ill. In American culture, we may ask questions like, “What did you do to become sick?” or “How come you aren’t doing more to prevent yourself from getting sicker?”

According to a Psychology Today article, “Shame comes from the internalization of this cultural belief that we are somehow at fault for getting ill and for continuing to be ill.”

I did have typical reasons for not wanting to disclose my FA. The thing was, I did myself and my friends a disservice by hiding. I think of all the help that I missed out on. I didn’t give them the gift of knowing me fully and being able to be there for me.

In no way am I saying I’m ashamed of being ashamed; I’m just saying that if I had a do-over, I’d do things differently. I told my husband of 29 years that I had FA within a month of us dating. So I learned to disclose well before I needed to use a walker or wheelchair, before it was obvious something was going on.

If you’re living with a disease like FA, I hope you won’t let shame hold you back from letting your friends know you. To paraphrase the American academic, researcher, and podcaster Brené Brown, once you tell people the thing you’re ashamed of, shame begins to dissipate.

This year, to attend the Race for Matt and Grace with me, Fran planned a vacation around the date, and Cathy and Pat came despite having to attend a wedding three hours away immediately following the fundraiser. I try to appreciate the magnitude of having friends like them!

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.